I wrote about this on our facebook page earlier today, and then realised that it should perhaps go in a blog post too, as it’s an example of the kind of thing which I might have found helpful to see a few years ago (or even now, as I’m always inspired by seeing how others work on supporting their kiddos).

As I’m constantly struggling to find enough hours in the day to do all the things I want to/should/really should/must do, I’m pretty much just pasting in my facebook post below. Here goes:

Who else here has a kid who doesn’t go to sleep before their parents in the evenings? It’s our ‘normal’, and has been so for most of Penguin’s life. And IF he’d go to sleep earlier sometime, say around 9 or so, he would most likely not stay asleep until a reasonable hour in the morning. Actually, it would be more likely that he’d be awake again after a couple of hours, treating it as a late afternoon nap…

Still, I feel quite lucky that his sleep is as ‘good’ as it is now, it used to be much worse (fingers crossed I’m not jinxing it now!). And I know there are others who have much greater sleep issues than us. Sending strength if that’s you!

The night before yesterday, I was daft enough to stay awake in bed for a couple of hours after Penguin fell asleep (which he did not long before midnight). We’d had an eventful (in good ways!) day, and I thought he was likely to need a good long sleep (you’d think I should have learnt by now not to reason like that). So when he woke up at around 5 am I was not feeling particularly refreshed…

Anyhow, a few cups of coffee later – and a snooze on the sofa for me, thankfully – we were thinking that perhaps a shortish outing to a reasonably calm and relaxing place could be on the cards. On the other hand, we weren’t sure that Penguin would be up for it, as he usually needs a good amount of time to relax and recover after eventful days. And considering that he’d had less sleep than most nights too, there was clearly a risk that going out again would be pushing it…

We decided to let Penguin make the choice. He had successfully managed to make a great choice between four options a couple of days before [about where to go that day] which was brilliant as choice-making is something that can be really difficult for him. So, I sat down with him on the floor and drew up two different options for the day: Staying at home to chill, or going out, to Sissinghurst (where we’ve been several times before and where he likes to roam around, especially on the estate surrounding the formal gardens).

While drawing the pictures you see here, I talked about what each choice would mean, and also got some photos from previous visits to Sissinghurst up on the iPad to make it more clear (I’m not quite trusting my drawing skills…). I then asked Penguin to choose, stay at home or go out to Sissinghurst, and he made a clear choice pointing at the ‘stay at home’ picture. About 5 mins later, I asked him to show daddy his choice, and he again pointed at the ‘stay at home’. So Penguin and I had a lazy day at home (sent daddy out for some errands) and even had a cheeky afternoon nap, yay!

I’m delighted that he was able to recognise his own needs and communicate this to us. Not only is making choices something which he can find very difficult, but also recognising his own body’s signals. His ‘bandwidth’ is often taken up by processing the present moment, so signals about being hungry, thirsty, needing the toilet etc might not get through as easily as they do for most people. And the difficulties to plan ahead and make fairly abstract choices is also related to his ‘living in the present moment’, which in some ways can be an awesome thing (some people pay a lot of money to learn how to be present in the moment!) ❤

These things can be a slow process. I’m happy for any forwards movement, whatever the pace.

Thank you for reading and commenting 💕 And yes, when they really struggle with communication, you certainly learn to cherish it! In regards to choice-making, there are so many aspects of it which can be tricky… processing the information, forming a mental image of what each choice would mean, possibly dealing with anxiety about making the ‘wrong’ choice, and actually communicating your choice (for example, Penguin lost his ability to point for a long time, so had to re-learn that skill) xx

Oh Kate, thank you so much for saying so, your words bring tears to my eyes 💜 It’s a journey of learning, parenting our special kids. If you’d found me years ago I wouldn’t have known what I know now, and I’m continously learning too. You’re obviously doing all you can for your daughter, always with her best interest at heart, and I’m sure that is a great help for her now even if you might look back and think ‘what if..?’ sometimes. I think we all do that, I know I do anyway, even though I try to keep my main focus on the present.
Thank you again for your comment, it means so much to me to hear that sharing our experiences can be of some little help to others 💗xx

Thank you so much for reading and commenting, Seren! It’s great to be able to share our experiences, worries and hopes as parents.
It can be really tough to have a child who doesn’t sleep enough, and although our Penguin’s sleep is much better now than it was a few years ago, it’s still something which I hope we can improve further… There’s always hope for progress, at any age, and even if your child is lacking some skills now, there’s every chance he’ll learn and develop them, given time, patience and understanding ❤️

That is a huge milestone for him! My son had this issue when he was younger as well and when he finally started to say something to us about what he needed, it was an amazing experience for us! #LGRTStumble

Thank you so much Sarah! ❤️
I bet you’re much better at appreciating the present moment than a lot of people I’ve met, who just keep rushing through their existence… Wishing you all the best with everything you’re currently dealing with xx

Thank you for this post- as an SLP, it is a wonder to see how you were able to make communication available to Penguin through both your pictures and actual photos. Your insight about bandwidth is quite intriguing. Although hard to measure, I think there is a critical point embedded in there. For children (or adults) with Autism, how much of their processing is in the moment- how much can they give to planning, organizing, etc. Lastly, I particularly like that you drew Dad in so that he knows everyone at home is a communication partner.

Thank you so much Dan, I really appreciate this comment from you! It’s great to get some feedback from your professional SLP perspective, and I’m of course very happy to hear that my experiences can be of some value to you and your clients. You seem to have a passion for your work, and a genuine interest in understanding and helping those who you work with, and that’s a wonderful thing to see! Thanks again for reading and commenting 🙂